Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Tuesday, November 18, 2014

NF, the gift which keeps on giving

This is what I have right next to me at the moment (Azriel and Henry the turtle). Yum.

Yesterday I had to present myself before a jury of sorts (4 doctors) to be evaluated for eligibility to receive a government stipend reserved for people with mobility difficulties. It allows for extra for devices, or helpers necessary to get around. I need it because it is hard for me to travel, so when I go anywhere without the car, I must use cabs. I also need to hire someone, like I have had for years now, to do much of the driving load that is on me. I pay for that out of pocket, of course. I simply get depleted by pain and fatigue when I do all the driving. Since the school year began almost three months ago, I have been doing all the driving, and it is really, really hard on me. I could use a stipend to help pay for someone to take some of the burden off me. Of course, I'd have to *find* someone first. The person I had last year, and the one we had over the summer when I was in the States are both otherwise employed now, and have no time to come help out.

I was waiting for my turn for the hearing, which came after three very obviously handicapped people- two in wheelchairs, and one on crutches. I walked in, on my own two feet. I knew what to expect, I had done this three times before. Once I received the stipend (I was on crutches right after a surgery), and twice I was rejected. I'll be rejected again this time. I was bullied, really. They wouldn't listen to me about why I am applying for this stipend. They did not even open my paperwork I brought (and spent over an hour to put together from my home files), or look at my MRI. The one doctor, the meanest and the dominant one, told me to get on the examination table. He proceeded to manipulate and maneuver my legs with such speed, I thought I'd faint it hurt so much. I yelled out at one point, but he just put that leg down and yanked and bent the other one hastily. I was literally in shock, and, of course, searing pain. After that exam, I was told that I'd get my answer in the mail. They didn't even ask me why I think I need this stipend, and didn't glance at my medical papers. I told them, in very short, with only one doctor looking me in the eye that both my hips have a torn labrum, and are impinged, but the dominant doctor cut me off, disinterested. I tried to say that I cannot, any time soon, do surgery to fix these problems because of the high chance of infection, cellulitis, and lymphoedema. I tried to point out that my recent surgery had to be canceled because of a reaction I had on the surgical table, which lead to cellulitis. Each time I spoke, I was cut off. I wanted to say that it is difficult, sometimes not possible, for me to put on socks and shoes, and event to cut my own toenails. I wear a lot of slip-on shoes because of this. Robert sometimes helps with foot needs that I cannot do. These are the things that people get stipends for, I will not get the stipend because they didn't let me speak, the doctor who manipulated my legs saw that they move normally, no matter how it hurts (pain is relative). The people before me took long interviews, and were indeed unable to get around by themselves. I am, in no way, thinking I need the same stipend they have, clearly, there percentages, based on need. I don't look sick, I walk by myself (thank Gd), so I was dismissed. I can't explain why I got so upset about it, but I did. It held over to today, as well. I just have been feeling like crying all day. It somehow triggered the feelings of isolation that happen when your world is not like other people's world, but it looks just like it is. I yearn for it to be like most people's normal, and am not always able to accept my normal. Getting the stipend would be an acknowledgement that indeed, I am in a difficult situation, and coping with it costs us out-of-pocket financing on a regular basis (not that this stipend would cover those fees, but it would help). Getting the stipend is also emotional; I was written off, not even given a chance. Doesn't that just stink?

I'll update about my appointment last week with the new pain doctor in Jerusalem. New/old, that is. I had seen him twice about four years ago, then decided to stop going to Jerusalem for follow-ups with him because I started with Dr. Z here, in Be'er Sheva. As I think I stated before, Dr. Z & I are at a bit of a crossroad, and it isn't clear if he can continue to accompany me on my chosen road. I feel quite "un-accompanied" by him, actually, in the process of weaning off the Fentanyl.

The Jerusalem doctor (Dr. Davidson, "Dr. D" for short) read the notes from my previous visits. Then we talked about what has transpired since then. At the time I left him, I was not willing to try his suggestions for a pharmacological (narcotic) approach to pain relief. I was hoping on a neuro-muscular simulator which would effectively numb the nerves which cause pain. He is the best in his field (anesthesiology) for that. Unfortunately, I wasn't a candidate for that procedure.

I didn't want to go narcotic. So, in place of narcotics, he suggested some sort of bone strengthening medicine mainly for arthritis sufferers, which is actually available over-the-counter in America. I don't have arthritis. I tried it for a few months, didn't do *anything* for the pain. I also started on Lyrica at his recommendation, which I stayed on for a year or so, but the dose needed to be raised higher and higher in order to keep up with my body's resistance. I maxed out on a safe dose for the Lyrica. I then switched to Gabapentin which was very bad for my kidneys, and gave me awful tremors in my hands. Switching, switching, eventually got to narcotics. Started out with straight instant-release morphine, then months on Methadone (which had quite awful, painful side effects), then the Fentanyl (in the morphine family) for a few years now, with ever increasing doses. I told him why I want to go off the Fentanyl, and he supported it, explaining clearly how to do it. I needed that. He told me that it's not important to go off 100% if I have too much pain, that we can start with a new medicine even of I'm not fully off the Fentanyl.

My personal goal *is* to get off Fentanyl, but I can already see that the dose I have already lowered (I did go the next step lower the night after that appointment) has resulted in more pain, plain and simple. How much can I do? Well, I hope to continue, a teeny bit at a time, with hardly any side effects. He had some suggestions if difficult side effects/pain do come about, but with the way he suggested to lower the dose, it shouldn't effect me badly. It is *very* gradual, small gradations of cutting my dose, with one to two weeks between each lowering. I have about six weeks to get as low as I can without suffering intolerable pain because it will take that long before the approval comes in for the new medicine.

I wish I could go off Fentanyl and not go on a new medicine... although this is the medicine which has been recommended to me for a while, without the side-effects I suffer now.

I JUST WANT TO BE DRUG-FREE.

But, I know, at least for now in my life, it's not gonna happen. My legs just hurt too much. I cannot maintain any sort of fulfilling life with constant pain. So that is the program for now... keep lowering the dose of Fentanyl until I decide it is enough, and start the new medicine when the approval comes in, which could take six weeks. After I start the new medicine, I may continue weaning, and finish the Fentanyl, but we have to gauge it as it goes.

The next issue is about the mysterious unexplained fevers which have happened. My lymphoedema massage therapist is reticent to continue moving fluids around my lymph system if there is infection there. She wants me to see an ID (infectious disease) doctor. I don't want to. If it happens again that I have a day with a fever and no other symptoms, I will go check it out. As of now, I am looking at those two days (three weeks apart) as not part of my regular picture. I'm not counting them as significant. The day I have the fever is *very significant*, of course, because it goes pretty high (38.5 Celsius/ 101.5 Fahrenheit), and I feel intensely lousy, but then it has broken in the middle of the night while I woke in a sweat. Happened twice. I decided that three strikes I'm out, and I'll go see the ID doc. At this point, she'd probably say that nothing can be done, keep watch on it. I don't need a whole morning wasted waiting in a waiting room and seeing the doctor to hear that. I already wasted all morning today at Soroka hospital needing to get fitted for another pressure bandage for the lymphoedema. Seems it's gonna be permanent. Two more fittings and measurements have to happen, then it has to be custom made, and I'll probably get it within a few months.

Going to the hearing for the mobility stipend ("va'adat nayadut", ועדת נידות), being mistreated, one whole afternoon spent while leaving the two kids home alone. Lymphoedema issue, one of many mornings spent in Soroka instead of writing my book. Medicine dose lowering, dealing on a daily basis with more pain, while nothing in my schedule changes to accommodate for it.

Tomorrow I go see Dr. Z, that will take a chunk of the morning as well. Not much book writing can happen these days, I need to know if Dr. Z will be on-board with the program that Dr. D suggested so I can do the follow-ups here, rather than Jerusalem. If he is not, which may well be the case, because he has not yet been supportive of the new medicine for me, I'll have to change completely to Dr. D, spend much more time traveling (and recuperating from traveling), in order to get the medicine that I need.

I also need to find a driver who can do the driving for me with picking up the kids from school and taking them to their activities every afternoon. The person just needs a licence, I can supply the car (and appropriate insurance, or course), if need be. Yes, this is fishing... anyone out there to chomp the bait?

As I have often said before, NF is the gift that just keeps on giving.

9 comments
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Sarah: It is a shame that panel of doctors was arrogant enough to believe they can "see" a disability. I'll pray for good results (at least a small stipend), but I'll pray harder for Dr. Z to come on board to save you the travel time, and that the medicine changes help. Hugs, my dear. Jackie

I am very sad reading this; I know that wasn’t your intention. I agree that your review by the va’ad was totally inappropriate. Once you receive their “official” response I hope you intend to appeal.

I understand your desire to get off all pain meds, but that may not be realistic. L Perhaps you could focus on an intention to be on paid med that is effective and has very little, if any, effect on your daily life. I know, easy for me to say.

Thanks, Edna. That is the idea... to get onto a pain med that has lower statistics of the sort of side effects I am trying to go away from. Also, I do plan to get some support for the treatement at the va'ada. There is an organization here which gives support to handicapped people to navigate the system. I'm trying to get over it.

You help by being one of my main supporters emotionally. That is more help than you realize. Sorry I am getting all legal on you about the driving... I gotta be 100% straight when it comes to driving my children around. I wish I could use your offer, though. When you get your license renewed, we'll tawk!! :)

Man, Sarah, I just want to punch those idiots from that va’ada right in the face! How DARE they?! Who set them up as G-d?

And you know what, they know that people who come to them seeking help because they have serious challenges won’t have the umph to try to fight them. Ooh, it’s so maddening and so unfair!! What’s wrong with those people?! When I meet up with this type of injustice, I try to comfort myself and say: there’s a beis din shel ma’aleh, and I will leave it to HaShem to take care of them. They’ll get theirs. It doesn’t undo the injustice, but sometimes I feel I just have to leave it to HaShem to deal with since I don’t have the – fill in the blank – the power, the time, the authority, the energy … to deal with it to try to make things “right.”

Thank you for your riteous indignation on my behalf! it does confim for me that my feelings are founded, and I am not asking for too much. Sometimes I can slip into thinking that I should be more active than I am, it'd be for my own good. Believe it or not, I do trip into that thinking sometimes. Not often. No choice but to negate that thinking as soon as I start to do too much. My body reminds me loud and clearly. Having chronic pain stinks so much. The fact that it is unseen makes it harder to deal with, believe it or not. When something happens like with this va'ada, it can actually cause me to wonder if I should be more grateful for what I do have, and "suck it up" when I am pain. Horrible that my own brain can do that to me, right?

I am not in that mindframe now, thank Gd, but it does happen. Also, I think it's because *I* can't see my handicap that I also fall into the "stinkin' thinkin' " again. Even though I know exactly what I went through, and how I got into this pain situation.

Anyway, thanks for the confirmation. And I also believe that when certain types of people get to the beit din shel mata, they will be judged exactly how they should be. In the meantime. I am seeking advice from the organization which is here in Be'er sheva called the "irgun 'lshivyon v'tzedek l'nechim" (organization for equality and rights for the handicapped). I've been to them before, they can pull for the handicapped person when they can't pull for themselves. Don't know where that'll lead me.

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch